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#768028 - 06/14/12 08:25 AM Strange Families and Childhood Disabilities
SNC_Editor_Pam Offline

BellaOnline Editor
Chipmunk

Registered: 06/11/05
Posts: 1398
Loc: SE of Seattle
Studies of families who include a child with a disability show them to be fairly ordinary, even though inspirational stories may describe them as extraordinary. There is anecdotal evidence that many families raising children with single or multiple disabilities or chronic health concerns are somewhat strange.

;-)

Pam W
SE of Seattle
Strange Families (Like Mine) and Childhood Disabilities
http://www.bellaonline.com/articles/art173610.asp
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Visit the Children with Special Needs Website

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#786266 - 10/04/12 08:40 PM Re: Strange Families and Childhood Disabilities [Re: SNC_Editor_Pam]
Lori-Dreams Offline
BellaOnline Editor
Chipmunk

Registered: 07/27/12
Posts: 1423
Thank you for a great article, Pam. I could identify with so much of what you wrote. My youngest child had a terminal genetic disorder. He died at the age of 12. My adult daughter was diagnosed a few years ago.

In any case, when we were in the midst of caring for my son, we were overwhelmed with the 24-7 care-taking duties. He also had sleep disorders which mean years of sleep deprivation for me. But I loved and love him so very much that it was not a real burden. In fact, I would do it all over again just to have him with us!

But we are a strange family. LOL.

Thank you for writing about this important issue. I know from experience that there are throngs of parents out there who need and who read your articles. They, as I was, are too exhausted and consumed by their care--taking to respond.
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Bellaonline.com Dreams site
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#786705 - 10/08/12 10:35 AM Re: Strange Families and Childhood Disabilities [Re: Lori-Dreams]
SNC_Editor_Pam Offline

BellaOnline Editor
Chipmunk

Registered: 06/11/05
Posts: 1398
Loc: SE of Seattle
Hi Lori,

Thanks for the kind words.

I am sorry for your loss. I know it is hard to explain that overwhelming caretaker duties are not a real burden compared with the loss we feel when we lose them. It is unimaginable until we are living it, and even then it is hard to wrap a mind around.

I know how difficult managing long-term sleep disorders can be, but that is just the way life goes sometimes.

Lack of Sleep and Rest for Caregivers

I have a feeling I was a strange parent before sleep deprivation set in - but I just don't remember!

Pam W
SE of Seattle

Sleep Disorders and Children with Special Needs
http://www.bellaonline.com/articles/art33877.asp


Originally Posted By: Lori-Dreams
Thank you for a great article, Pam. I could identify with so much of what you wrote. My youngest child had a terminal genetic disorder. He died at the age of 12. My adult daughter was diagnosed a few years ago.

In any case, when we were in the midst of caring for my son, we were overwhelmed with the 24-7 care-taking duties. He also had sleep disorders which mean years of sleep deprivation for me. But I loved and love him so very much that it was not a real burden. In fact, I would do it all over again just to have him with us!

But we are a strange family. LOL.

Thank you for writing about this important issue. I know from experience that there are throngs of parents out there who need and who read your articles. They, as I was, are too exhausted and consumed by their care--taking to respond.


Edited by SNC_Editor_Pam (10/08/12 10:36 AM)
_________________________
Pamela Wilson - Children with Special Needs Editor
Visit the Children with Special Needs Website

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